[AMSTERDAM] HIV research must focus on young women and girls that still see growing rates of infection despite a global downturn, a conference has heard.

Women between 15 and 24 years of age are the only population in which the global rate of HIV infections is increasing, delegates heard at the AIDS 2018 conference this week (23-27 July) in Amsterdam, the Netherlands.

Young women and girls also carry a larger share of the HIV burden compared with men and boys in many parts of the world. In East Africa, around 2.5 per cent of women aged 15-24 carry the virus, compared to around 1 per cent of men.

Part of the problem is that studying women as a subgroup is difficult, scientists told the event. This is because women in poor areas are often less literate and mobile than men, meaning they can struggle to contribute their experience to science. They may also face specific obstacles to seeking treatment or getting involved in research, such as duties of care towards children and the elderly.

Understanding these obstacles is particularly important when it comes to marginalised women such as sex workers, said Stefan Baral, an epidemiologist at the Johns Hopkins School of Public Health in the United States.

“It is fundamentally important to understand who is living with HIV, and why.”

Stefan Baral, Johns Hopkins School of Public Health

Baral pointed out that in South Africa, one-third of female sex workers carry HIV, yet little to no research is looking at their behaviour and healthcare needs. “Sex workers are often not considered relevant in epidemics,” he said.

According to the World Health Organization (WHO), around 37 million people living with HIV/AIDS, leading to a million deaths every year. The focus of research and awareness-raising has long been on men who have sex with men, the conference heard, and this has been successful: infection rates among men are falling across the globe.

But for young women, traditional gender roles add to the difficulties of accessing healthcare and getting tested — and this contributes to the increase in infections seen globally.

In many parts of the world, a woman has little power to make her own decisions or manage money. Stigma is also a problem, Caroline Thomas, the programme manager for Persaudaraan Korban Napza, a network of organisations in Indonesia, told SciDev.Net.

Thomas explained that many Indonesian women will avoid seeing a doctor, or even getting tested because they don’t want to be ostracised by their community or risk their chance of marriage.

Another obstacle is that women may practice risky behaviour that is socially taboo and so hidden, which makes it difficult to study. One panel discussed transactional sex, where women agree to sexual contact with a man in return for favours, status or material goods.

The practice is common in many African countries but remains woefully understudied as most women are reluctant to talk about or acknowledge it, according to Kirsten Stoebenau, a sociologist at the American University in the United States. Her research found that an estimated 45 per cent of East African women between 15 and 24 had engaged in transactional sex in the past.

“Poor measurements make it really hard to understand its contribution to HIV,” Stoebenau told the event.

According to the 2018 Global AIDS Update, a report released in anticipation of the conference, infections may also be increasing among indigenous people, even in countries such as Australia and Canada where overall infections are in steep decline.

Although experts believe rates are worryingly high among such groups, a lack of adequate data makes it difficult to estimate the true extent of the problem, the conference heard. Research on the Warao, an indigenous community in Venezuela that consists of only 600 people, found that 10 per cent carried the HIV virus and none were receiving treatment.

In response to the discussion, policymakers at the conference renewed calls for universal healthcare, one of the Sustainable Development Goals. This would allow marginalised and poor people to access care despite financial and social restraints. “No one should go without treatment or die from HIV because of lack of access to basic healthcare,” said Tedros Adhanom Ghebreyesus, the WHO’s director general.

But for the scientists, it’s also important to increase research into specific communities, their response to the disease and the obstacles to seeking treatment.

“Let’s move away from the concept of a general population,” Baral told the audience. “It is fundamentally important to understand who is living with HIV, and why.”